Tomorrow I shall drive to Dover NH for my second COVID-19 swab. Not because I am symptomatic but rather because I am now scheduled for an endoscopy on Monday and this is a requirement.
The endoscopy is indicated by the fact that my throat/esophagus is yet painful, almost five and 1/2 weeks out from my last infusion. Not the usual course of events. So the plan is to see if something else–perhaps a secondary infection–is responsible for my discomfort.
I am on board because part of being a participant in a phase I clinical trial is parsing out the safety profile/side effects of drug. Although I am the only person to (thus far) report mucositis effects of such sustained extant, it does not mean I am an anomaly. I might simply be the first.
This is the responsibility of being in a clinical trial that is often under appreciated. Phase I is not to test for efficacy but rather for safety. My primary responsibility is to not only take drug, but also to report back side effects.
It is empowering but also can cause one to doubt oneself. In phase I you are often the first (and sometimes only) person to report a particular side effect. However, I take this seriously. Like an astronaut, I am traveling to places uncharted and it is my obligation to note and record what I see and experience.
The last few days have been tough. I’ve now got ulcers all throughout my mouth and down my esophagus. My sinuses and ear canals hurt as well and it is my guess that anywhere I have a mucous membrane has been affected.
This has impacted both my appetite and my ability to eat. Basically I am getting down whatever I am able to and a case of powdered ensure arrived on my doorstep yesterday.
I had been told that hair loss was a possibility and three days ago it started coming out in handfuls. I’m rocking the plucked chicken look now and my follicles are all hyper sensitive. This afternoon Diane is taking me to a friend of hers for a buzz cut—somehow more dignified than heading to Super Cuts.
My usual joie de vivre and can do spirit has taken a (temporary) hit as well. I’ve spent a lot of time on the couch doing nothing, just literally riding this wave until it’s over; the wave being depression.
Even warriors have their down days–this shit gets old. On Thursday I will have my second infusion and have to hope that by pre-dosing with steroids and Benadryl we are able to avoid an infusion reaction. My team will be on high alert with epipens at the ready.
In the meantime I am trying both to be gentle with myself but also to push forward. Nobody said this would be easy. I just didn’t think it would be this hard.
But…(because I do like to end on a positive note) my breathing really is better. That is a wonderful thing and (if I believe my own pep talks) worth wading through. I can do this.
I can. And I will.